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oh man! just lost my whole post.


check out http://pandasnetwork.org/resources-new-research/for-the-school/.



glad to hear the principal is open and helpful. even though it's old, i still love the school nurse news. the OT pieces are priceless! maybe b/c they are from the 'inside' of the school system.


i will give you a little warning from my experience. last year, i prepared a beautiful folder with the orchestra letter, school nurse news, a list of websites and references. i very much considered what would be informative but not too overwhelming.


still, it was too much. unfortunately, our situation turned into the worst possible one. at first, they were very appreciative and impressed - stunned really - to hear of this. however, it set things up that they didn't know any of this - what they eventually thought was some alien disorder - and i was so knowledgable, involved in the 'pandas movement.' it became something they thought they couldn't work with. (even though for the 504 mtg, we had medical pandas diagnosis and pscyh anxiety diagnosis letters)


i think a much better scenario is short and sweet on pandas, a doc's letter, and then, LISTEN to what they think and what they are willing/able to provide. i'm not saying you need to accept it if you don't agree. i'm saying you need to KNOW where they are coming from to best decide on how to act that will best help your child.


when everything fell apart, i was stunned how quickly it changed. i later realized it reallly didn't -- we were never really on the same page as i thought we were. i just didn't know it.


they don't live our lives. they may see some things, but they don't get it like we do. i don't think the best plan is to try to have them understand like we do. i think a better scenario is to understand what they get and see how you can work within that system in a manner best for your child. for my ds, it is pandas that he has, but it presents in asperger-like manners. this is easier for them to understand than pandas that they 'think' they have never seen before.


i have only recently become aware of the general disconnect between any particular school and the county level. if you are not getting what you need at your school, there is a whole array of help you may be able to access at the county level. i am amazed at this in my county and can only assume it's similar in others. (although my county does seem particularly disfunctional)

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I agree with Smarty.


I have found the school mostly interested in "what does your child need from me" kind of attitude- more than trying to really "understand". (the teachers, in my experience, are the ones that really want and need to understand pandas).


I have always started our relationships with schools with a doctor's (neurologist) letter of diagnosis, and also we have used a psychologists letter that suggested accommodations. I have never given the school any pandas information.


I have NEVER been questioned.

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I'll post the text of the outline I did for my daughter's 504 below - and I didn't bring any other materials other than the dx letter. Keeping it short and sweet, and within the context of what the school can do is the way to go. We came in overly prepared for my son's IEP meeting 3 years ago and had a similar experience to smarty - but the 2nd meeting was better. I learned this time around. Hope this helps.



504 Outline Information


Background Information:


McKinley has been diagnosed with a medical condition called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus), also now being referred to as PANS. This condition is commonly referred to as “rheumatic fever of the brain”. When McKinley becomes ill or is exposed to certain bacteria, particularly strep, her immune system launches an inappropriate response against the basal ganglia in the brain, causing neurological impacts including tics, anxiety, ADHD and obsessive compulsive behavior. Other characteristics of PANDAS include frequent urination, loss of fine motor skills (particularly handwriting), and loss of previously mastered math or language skills.


McKinley often shows limited signs of physical infection (fever, sore throat) but does exhibit other clinical symptoms (elevated heart rate, peri-oral pallor) making the neurological symptoms exhibited often the first sign of active infection. McKinley’s symptoms typically subside with 30 day treatment for the underlying infection, however they may resurface at any time, including with exposure to strep without contracting the infection.


PANDAS/PANS is a chronic condition and it is not possible to predict with certainty how PANDAS/PANS is going to affect an individual in the future. The pattern of relapses and remissions varies greatly with each patient.


Since the start of the school year, McKinley has already missed school 2 times related to strep infections, and had to leave early many others for doctors appointments.


McKinley tends to display moderate anxiety symptoms as a result of PANDAS. She enjoys school, and is driven to please her teachers and friends. When in a PANDAS/PANS flare, McKinley is an OCD perfectionist. She will have increased anxiety about her ability to complete the work, often avoiding an assignment if she feels she cannot complete it without error. She can become overwhelmed making seemingly minor decisions with a fear that she will make a wrong choice. She often has other intrusive thoughts that may overwhelm her ability to focus on the task at hand. When in a flare, she often tends to become impulsive and will withdraw from class participation and interaction with her peers. Her anxiety at times will also physically manifest it self through the chewing of her fingers and hair.


McKinley is currently under the care of the following doctors for the treatment of PANDAS:

  • Dr. Robert Friedmeyer – Pediatrician, Tampa FL
  • Dr. Tanya Murphy – Psychiatrist/PANDAS specialist – USF Rothman Center, St. Petersburg, FL
  • Dr. Megan Toufexis – Psychiatrist – USF Rothman Center, St. Petersburg, FL
  • Dr. Adam Lewin – Psychologist – USF Rothman Center, St. Petersburg, FL
  • Dr. Jillian Childers – Psychologist - USF Rothman Center, St. Petersburg, FL


McKinley currently takes a 30 day course of antibiotics when there is evidence of an active strep infection, along with probiotics and daily ibuprofen as needed to reduce inflammation in the brain. If there is increased risk of exposure to strep, McKinley may be put on a prophylactic course of antibiotics in 30 day intervals as needed.


For more information on PANDAS:






Accommodations that would benefit McKinley in the school setting (those marked with * are currently being implemented voluntarily by the school):


  • Frequent wiping of her desk, chair and common areas with Lysol/Clorox wipes to avoid illness*
  • Limited sharing of common supplies to avoid illness*
  • Frequent use of hand sanitizer or hand washing (particularly after common activities) to avoid illness*
  • Notification when there are high incidences of illness in the classroom, particularly strep*
  • Notification when McKinley begins to exhibit unusual behavior in the classroom*
  • Notification to parents in the classroom informing parents that there is a child with an autoimmune illness and to report illness, especially strep, to the school so the family can be notified. *
  • As needed, allow McKinley frequent restroom breaks*
  • Allow McKinley extended time to complete assignments as needed
  • Modifying assignments to demonstrate mastery of a concept vs. repetition
  • Extended time for standardized testing when applicable
  • Allow the use of dictation or computer written assignments/assessments if grade is not dependent on penmanship
  • Ability to perform homebound work in the instance of prolonged absence due to infection or chronic illness at the school
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Thank you! The meeting today went very well. She is implementing a 504...her suggestion. She is willing to start her back at a very slow introduction....1-2 hours a day as progress from there. And she recommended that we do all of this BEFORE I hand in her medical note to return to school, so my dd9 is totally comfortable before we withdraw the home tutor. She said, "once She is back in school and the tutor is gone....she's gone until another exacerbation." She was familiar with PANS and is a very proactive principal. Hope it all holds true!!


Thank you for you input!

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Jennifer -- that's awesome. a supportive principal can be such a great help!!


you may want to check out a recent post of mine - sorry, i don't know how to link it -- i'm the original poster from 2-22.


last year, my son was new to public school and on day 2 when he was resisting going in, they suggested 504. we were very unaware of all the ins and outs of public school and SPED. this year, he's in a great school with great personnel. they did testing so they got a good awareness of him. still, his issues do not "adversely affect his education", so he is on a 504, not IEP.


even with these meetings, my own research, our psych that is extrememly helpful at the meetings, me specifically asking the differences between 504 and IEP when it was developed, there are key differences i did not understand until last month. it's not really anything that will make a difference in his day-to-day life at school, just very important for me to understand the how, where, and what the 504 means for him.

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